Tuesday, June 16, 2009

Hypothalamic Amenorrhea Recovery / Treatment Summary

I have been posting on the hypothalamic amenorrhea (HA) bulletin board over at fertilethoughts forums for almost three years now - I wished when I was diagnosed and starting treatment that there was someone who had already been there that I could talk to about what I was going through. It makes me warm and fuzzy inside to be able to provide that input and insight to others who are going through the same things now.

Over those three years, I've learned a lot, and also collected some pretty interesting stats that I thought I would share here for anyone who finds this blog searching for info on HA.

There seem to be two different flavors of HA, both with the same manifestations. The first variety comes in women who are normal to low weight, and undereat / overexercise to a BMI anywhere from 21 on down. The second happens in women who were overweight to begin with, then lost a significant amount of weight; in some cases going to low BMIs as well, but occasionally just to a 'normal' BMI of 23-25.

In the first case, gaining weight and cutting exercise seem, without fail, to restore natural cycles. This is despite what many doctors have told women on the board, "You could gain 50lbs and still not start cycling again." This is NOT TRUE. I'm finally starting to see posts from some women who say that their doctors won't treat them until they've gained some weight. The thing is, not only does gaining weight and cutting exercise help with complete recovery from HA, it also helps with treatment cycles if the natural approach isn't fitting in with timelines. There have been a number of women on the board who have either tried Clomid with no success, or injectibles with cancelled cycles for overstimulation, and even multiple failed IVFs. After weight gain, Clomid works in *many* cases despite the traditional wisdom in the literature that it won't work for HA because of the low estrogen. Injectible cycles go significantly better after weight gain. And IVF cycles seem to be much more successful as well. Also, the weight gain that comes with pregnancy is mentally much easier when some of the disordered eating / exercise / body image issues have been conquered prior to pregnancy.

In this first type of HA, what happens is that as the body goes into a semi starvation mode with a constant energy deficit due to the undereating/overexercising, leptin levels decrease (see Welt CK et al. for the full article). This then leads to decreases in the levels and pulsatile frequency of LH, and estradiol, and the natural hormonal cycle stops. Increases in eating, particularly in carbohydrates and fats (good and bad) restore the natural leptin levels within a reasonable amount of time - usually 6 months to a year after making wholehearted changes (in many cases cycles are restored even more quickly than that; the quicker the weight is gained, the more quickly the cycles return).

In the second type of HA, in women who were overweight and then lost a significant amount, it seems take much longer for cycles to return. I believe this is because in people who are overweight, leptin receptors become desensitized, and not as responsive to the leptin signals. When the weight loss occurs, leptin levels decrease, just as in the first variety. But when eating is resumed / overexercising moderated, the increase in leptin levels is not registered as quickly by the body because the leptin receptors are not as responsive. This is my own theory, but it's the only thing I've been able to come up with to explain why women who were overweight seem to have a less tractable form of HA.

So the upshot is, if you have HA having been normal weight / thin most of your life, you can restore your cycles reasonably easily by gaining weight to a BMI of around 23. For most women that has done the trick; many have resumed cycling at a lower BMI than that. It takes committment, it takes handling feeling "fat" (although as a whole we tend to have quite skewed body images - many of our significant others and friends comment on how much better we look after gaining weight - and they do mean it!), buying new clothes in larger sizes really helps. If you have HA and were overweight before losing / exercising, weight gain will still help with treatment, but it will likely take longer before your cycles will return naturally.

If you want to be pregnant NOW (and who doesn't after deciding it's time?), weight gain can still really help. As you can see by checking the stats below, Clomid DOES work in many women with HA after weight gain. Sometimes even without a positive response to Provera. If you have HA, and don't have insurance that covers injectibles, I think you should absolutely 100% give Clomid a try before putting down the cash for an injectibles cycle. If your OB or RE will go for it, the extended Clomid protocol seems to have great results; if not, even a standard Clomid protocol will often work.

Starting in October 2007 I kept track of (just about) all the women who posted on the HA board, how they got their BFP's (which almost everyone has, still working on some of the recent joiners) and other random information.

So far, there have been 82 BFP's in total. Unfortunately, 14 (17%) of those have resulted in miscarriage, which is fairly close to the rate that is normally quoted for miscarriage. Of those 82 pregnancies, the breakdown by method of conception is as follows:

Natural: 31 (38%)
Clomid (including extended protocol): 22 (27%)
Injectibles: 20 (24%)
IVF: 5 (6%)

Also, these stats do include some women second pregnancies after recover from HA. By and large, if weight loss post partum is moderated and the patterns of undereating/overexercising are not resumed, natural cycles are restored after weaning (it is extremely rare for a former sufferer of HA to resume cycles while nursing). Most of the subsequent pregnancies are falling into the natural category.

As you can see, this totally belies both the assertion of medical professionals that you can gain an infinite amount of weight and still not cycle again, as well as the idea that Clomid will not work. In fact, 70% of the pregnancies achieved (after 10/2007) on the HA board have been through one of those two methods. And I am firmly convinced that many of the women who did use injectibles or IVF could have gotten pregnant either naturally or with Clomid had timetables been different.

As this is my summary of all I've learned about HA over the past three plus years, a few other things that seem to come up frequently:

* As our cycles return, they tend to be quite a bit longer than normal cycles, with ovulation in the CD40's (or higher) for the first cycle not uncommon. As weight gain is maintained, cycles get shorter. This isn't a surprise, as it takes a while for the body to respond to the restored hormonal levels.
* A BFP on a late ovulation is not a problem at all, despite what you may read online. The thing is, that the follicle is not sitting around with a mature egg in it; once the follicular recruitment really takes off, ovulation is actually occurring in a normal timeframe; it just takes longer to get to the follicular recruitment phase.
* Speaking of which, it's not uncommon to go through 2-3 follicular recruitment waves accompanied by changes in cervical fluid / temp prior to actual ovulation occurring, especially as cycles are returning.
* Estradiol is NOT the be-all-end-all as far as HA diagnosis goes. In fact, estradiol levels don't really seem to correlate much with whether natural cycles will return or Clomid will work. For me personally, my e2 when I was not cycling was 32; the two cycles where I got pregnant it was 27 and 34 respectively. It seems that the LH number is much more indicative of HA status - LH below 2 is likely to indicate HA; as recovery continues, that number rises much more reliably than e2 does.
* If Clomid is used, we *still* tend to have longer than normal cycles, often not ovulating until somewhere between CD20-30, so that should be your expectation. Monitoring is a great idea if you can afford it / your doc will do it - there are cases where women have grown good sized follicles but just not been able to muster the LH support to surge properly to ovulate. If you're being monitored and this seems to be the case, a shot of Ovidrel can be given at relatively low expense, to induce ovulation.
* If you want to move on to treatment and have the option of using the GnRH pump or patch, jump on it! They seem to be far the best ways to induce follicle growth without overstimming.
* In injectible cycles, it is extremely easy to overstimulate as our bodies are not used to the hormones that are being injected. First, your injectible should absolutely include LH (so Menopur or Repronex) - the cycles that have been completed on the board with FSH alone (e.g. follistim, bravelle etc.) are generally much less successful. Second, your protocol on your first cycle should be to start with a single vial (75U, or even less) for at least 4-5 days. Increase the dosage after that, preferably by just a half vial at a time. I have seen too many cases where either a higher dosage (common in injectible cycles for non-HA women) or too quick/big jumps in dosage lead to multiple follicles and either cycle cancellation or multiple pregnancy. In most cases we tend to be quite fertile once ovulation is induced, so the goal on the first cycle should be one mature follicle, or at most two. Of those 82 pregnancies, 3 were triplet pregnancies (two from Clomid) and one was a quadruplet; prior to 10/2007 there were two other triplet pregnancies and another quadruplet on the board. *Many* of the women on the board who moved to injectible treatment were successful on the first cycle.
* Injectible cycles following the recommended low/slow protocol DO tend to be quite long, with stimming for two-three weeks not out of the ordinary. There's nothing wrong with this, and no reason for the cycle to be cancelled - you will find a dosage at which you respond, and your follicle(s) will take off from there. Generally once a follicle gets to be 12mm+ / e2 goes over 100, the stimming will just take a few more days until trigger.
* For subsequent cycles, if needed, you should NOT start with the dosage that you finally responded at; that will almost certainly lead to recruitment of too many follicles. Start at least half a vial lower than that for the first 4-5 days, then bump up to the dose you respond to.

If anyone comes across this post and has questions or comments, I'd be happy to respond, feel free to use the comments section.


marty said...

This is a FABULOUS post! Thank you so much for all the support and information you've provided over the years. :)

(I'm Marty/marthand99, by the way)

julia said...

Hi there. Can't believe you just posted this as I've just come across your blog... the timing is uncanny as i'm trying to hunt down all the info i can to learn about what i'm (most likely) dealing with. feeling a little overwhelmed to be honest, but i'm bookmarking this posting (and your blog!) to come back to. just wanted to say a quick thank you. i'm so sorry you had such a long journey to get your two beautiful boys- but you've certainly positioned yourself to help others with the knowledge you've gained!

ItsTheWooo said...

I am in the second group (once very overweight, now a low normal bmi) and my own research suggests that the reason we have a more difficult time fixing hypothalamic amenorrhea is because our leptin levels do not rebound the same way as a person who was never overweight.

Leptin levels become disorganized and are much lower than body fat would predict after weight loss. They key is degree of weight loss. Not absolute body weight.

For the first group of people, they are almost returning to their baseline weight, thus restoring leptin too. Leptin is only produced normally when a person is at/near their baseline weight (assuming nutrition is in line of course). For the woman who's starting weigh tis obese, she has to gain a whole lot more weight in order for her body to produce leptin normally. To her body, a bmi of 23 or 25 is just as underweight as a bmi of 21.

Nico said...

Wooo, that makes sense too! I guess it doesn't really matter what the reason is though, I think it's just important for people in the second group to know that their recovery might take a little longer...

It does happen though - there are a couple of women on the board who have recently gotten their cycles back after significant weight loss to low BMI and then returning to a more normal range.

Unknown said...

Thanks you so much for all of the information you always provide!

Junior said...

I'm glad to come across your post, I am pretty sure I have AH. I went off BC in Feb. to conceive but have not gotten my period. I usually exercise 4 days a week for an hour each time, half running/half elliptical. I have restricted eating - not a full ED but also not normal. I have an appt with an infertility specialist tomorrow but am worried he is going throw a bunch of meds at me, however I want to be sure that I'm treating my whole body - getting healthy before getting pregnant. Afterall, if I'm not healthy enough to naturally get my period then I am not taking care of myself well enough to have a baby.

When I was in high school (15 years ago), I ran cross country and did not get my period. In college I gained 15 pounds and was regular before going on BC. I was on BC for 10 years and went off in February...bringing us full circle in my story.

If you are interested, I will keep you updated on what the doc says this week and what steps I take to resume ovulation. I'm really nervous.

Step 1: get over the eating enough to gain weight and still feel good about myself. That is going to be a HUGE step just to start.

Unknown said...

I'm so greatful I found this. I'm 27 and have had HA for 11 yrs. now and having been TTC for 5 yrs. I've also been recently diagnosed with Celiac disease and have put TTC on hold while I sift my own health out. It's seems you've amassed a wealth of information!! I can't wait until I have more time to sift through it all!

robin said...

Thank you so much for this! It's nice to see a group analysis as most of what I read are just individual accounts.

I was wondering if anyone had information on fertility after pregnancy for previously diagnosed HA women.

(I fit into the second group, had 4 very slow, conservative menopur IUIs, the final one successful. I'm still breastfeeding my now 9 month old, and am hoping to start cycling naturally again once I stop)

Nico said...

Robin, I have to say that based on the experience on the FT board, almost everyone has regained cycles after their first, whether that was from injectibles, IVF, clomid or natural. I think you just need to be careful not to overdo the weight loss / exercise, and you should be just fine. I will do another post on this topic, great idea!!

Anonymous said...

How exactly does a recovery from HA take place? Do you just wake up one day and find blood on your underpants and go through normal bleeding? Or is is possible that you first go through phases of scant periods, as a sign of slowly recovering? Coz I've been having scant periods for around 3 months now after I've committed to gaining weight after an ED. I've been struggling with the disease for 3 years and been amenorrheic for 4. I'm worried coz I might be getting married soon, and of course, I wanna have kids! :) Could anyone share their recovery? I might gain some insight on how you did it and how it happened. :) thanks!

Anonymous said...

btw I'm 21 years old, Asian and 105 lbs, 5'2". My lowest point at my ED was 85 lbs (I know, scary). I am normally at the lighter side and I had my periods then. But even if I managed to get back up to my pre-ED weight (105 lbs), I still didn't get my periods back. So do I need to "jumpstart" it somehow?

Anonymous said...

Nico, this is truly the most helpful piece of information I have come across (and i have done A LOT of research). I too have been diagnosed with HA. I was on BCP for 10+ years before coming off two years ago when I got married. ( My period was normal before, at age 16). I have had every test under the sun - pituitary MRI, blood, even saliva when I was seeing a naturopathic doc. I have tried every type of alternative therapy including acupuncture, herbs, etc. No luck! I finally made a decision to see an RE in June, and after two cycles of estradiol/prometrium, I'm on day #3 of menopur injections (37.5IU to start). I fear that I too have fallen victim to overexercising, although every doctor I ask doesn't think that is necessarily true. I'm 28, 5'6" and 135lbs. Not underweight and a healthy 21 BMI, but given I work pretty hard towards it probably not where my body wants to be? I want to give this my best effort and willing to cut back if that is the missing piece. My question is how much do I need to scale back? Is 30 mins of cardio still too much? Is running even a short distance/slow out of the question? Exercising is truly a stress release for me and I fear it may make me more anxious/stressed if I take it out completely...and that obviously won't help the TTC. Is it more important after the IUI or just important during injections? Any advice would be so helpful!!

LS said...

This is a life saving/baby making topic and I am thankful for it. I stumbled across your site trying to find others that have recovered from HA. I am 39 and have had HA for 9 years. Also, I do have disordered eating, overtrain and now have osteoporosis too. Is any of this reversable. I would love to connect with other women that could share EXACTLY how they turned their bodies around for the better.
Thank you for your blog and scientific facts to educate........ Any advice will be put to practice.

Nico said...

Anon and LS, I'd recommend that you check out the bulletin board at fertilethoughts - the one for women currently suffering from HA is at http://www.fertilethoughts.com/forums/showthread.php?t=343535&goto=newpost - there are women there who have recovered and are cycling on their own, also women who are still trying to recovery (and get pregnant). There are also a couple of other boards that are mostly those who already have a baby, some conceived through injectibles, others naturally - http://www.fertilethoughts.com/forums/showthread.php?t=563777&goto=newpost.

Anon, unfortunately there isn't a one-size fits all prescription. But, I would say that you will recover most quickly if you cut out all strenuous exercise - maybe go to just walking for a month or two? I think that part of it is mental too - you need to learn to be okay with not exercising every day, and not micro-managing what you're eating... eat when you're hungry, and let yourself eat whatever you feel like.

LS, HA is 100% reversible. It will take gaining weight and cutting exercise so that your hormonal system realizes that it is not in a stressed state anymore. Do check out and post on the boards, there are plenty of people there who would be happy to share their how their recoveries went.

Lia said...

I would say to be careful about over generalizations. I have never been under weight, nor particularly over weight. In fact my weight has been stable and normal my entire life and yet I have diagnosed HA. Not everyone, sadly, fits into the convenient categories, just so you know.

Nico said...
This comment has been removed by the author.
Anonymous said...

Quick question. Having HA, if I am currently on estrogen does this not suppress my bodies ability to make estrogen on it's own, even if I am gaining bodyfat, weight and exercise less?

My RE is ready to start IVF but I mentioned clomid. He said, "no way...won't work..you're too lean". I said I want to try Clomid anyway. I DO NOT want to take the IVF route without exhausting all other resources.

Thanks, Lisa

Anonymous said...

One more question. Am I less likely to respond with clomid because I am 39?

Anonymous said...

This is a great blog, thanks for sharing! Just curious...I have been told I have HA but have remained average/normal weight my whole life and exercise 3 x week. Also, all hormone tests have been normal. I was under a lot of stress during grad school 1.5 years ago. Do you think that would cause HA? We have been TTC for 9 months, started clomid 1 month ago and am on the 2nd cycle 50 mg. I clearly ovulated last cycle and am hoping this trend continues. Any idea how successful clomid is for HA? Do I sound like someone with HA?

candice said...

Hi, it was so good to hear your comments, I am 24 years old and I have lost 7kg in the past year with a proper eating plane and I exercise 4/5 times a week and I have not got my period for about 15 months. I am on clomid now and are trying to fall pregnant, but im now thinking if i gain 2-3kg I might start getting my period back. Your advise was great!!!

Florence said...

Dear Nico, Thanks so much for your time and efforts blogging about this. I am living in the UAE and have been suffering of HA for about a year now, and all doctors I have seen are completely lost about what to do with me as I am adamant not to go back on BCP (I would like to be pregnant at some point). After putting on 10 pounds already, I am now 63 kgs for 1.79m. I have never really been bigger than today but I have been very controlling with food and exercising a lot since 2006 so I will give your method a try and stop depriving my body of whatever it craves. Hopefully my period will get back again and I will be able to become a happy mum like you seem to be today. Thanks again so much for this. Take care,

Anonymous said...

Jackie said...

This is slightly off topic but I just wanted to let you know that I found your blog last year when I was in the exact same position you once were. It verified my own research into HA, which my doctors in the UK said was rubbish and I decided to follow all your advice.

After 15 months of HA I had two periods and conceived our first little bean 2 months ago.

Sometimes we touch lives in ways we have no idea about. I just wanted to let you know.

Jackie C X

Anonymous said...

I have a year history of HA due to history of ED/over exercise. I am at a healthy weight now, but still exercise.

Does anyone know what the guidelines are for exercise? Is 30 minutes of moderate cardio too much? Weight training?

Any help would be appreciated!

Kay said...

YAY! You have no idea how excited I was to find your blog on HA! I should say I think I have HA, my (awful Gyn) doesnt seem to think so, but offered no answer as to why I have no menstruated in 2 years. I was 5'6" 140lbs the majority of my adult life, then 3 years ago went down to 110lbs and bounced from 110-115lbs and was eating vegan, after doing a lot of internet research HA seemed like the most logical Dx because of the weight loss/disordered eating, but since im not TTC my doctor really hasnt offered any insight (actually her insensitiveness towards disordered eating is a whole another post!).
Any category one HA's get their periods back and can maybe share some tips, I am currently stuck at 125lbs which puts my BMI as normal but I heard once you go too low on weight you might need to gain extra weight back to restore your menses?
LS, I has osteopenia in 2008 (Dexa of -2.0 and in 2009 after weight gain/yoga and diet overhall its down ot -.5) so I believe you can reverse some of the damage

Anonymous said...

I can't thank you enough for this post on HA! I was diagnosed with HA yesterday by my gyno who has thrown in the towel on me and recommended I go see a fertility specialist. I am 26, 112 lbs, a vegetarian and an avid runner. Obviously my first steps in TTC were to gain 15 lbs and cut my running in half. My gyno led me to believe that this was sufficient, however after 4 months, two rounds of provera, followed by premarin treatments, there is still nothing. I have not had a regular period since July 2009 and never had issues with my cycle prior to going off the pill 8 months ago. I know each body is different and the recovery from HA depends on the amount of weight gained, etc but typically how long does it take for your body to respond to a drastic change in exercise/weight? I am ready to cut out running all together but don't want to set myself up for disappointment every month if it is going to take a significant amount of time.
Thank you again for this information - I left my gyno's office feeling somewhat helpless yesterday and wanting answers - You provided them!

lauramich said...

I am almost in tears reading this. I started losing weight just a few months before my husband and I started TTC, and I firmly believed that losing weight would be nothing but beneficial to my fertility. My resolve to keep losing strengthened as month after month passed with no BFP in sight. When I first saw an RE, he agreed that losing weight was the best thing I could be doing to boost my fertility. At the time, my periods were normal and my inferility was "unexplained."

I kept losing; by the time I started to maintain, I'd lost 145 pounds (just over half of my starting body weight), going from a BMI of 44+ to a BMI of 21.5.

In the summer of 2009, I noticed through charting that my ovulation date was coming later. This started right after my mother died, so I blamed the emotional stress. Then, a month after my laparoscopy (which found Stage II endo—so much for "unexplained"), I had one fairly normal cycle and ... nothing for four months. I went back to the RE. He prescribed Femara, but when I asked whether my weight loss could have something to do with my lack of periods, he was dismissive because I wasn't underweight. I broached this with my regular doctor, and she said the same thing.

Two days after I saw the RE, I finally got a period; I joked that he'd scared my uterus. I didn't take the Femara that month and ended up with a 35-day cycle. I did take it the following month and ... zilch. As I write this, I'm on day 60-something of my current cycle, with no end in sight.

I've often said that losing weight was the consolation prize for not getting pregnant; given a choice between size 8 jeans and a baby, I'd rather have the baby. But I'm still scared of regaining. If I knew that putting 10 or 20 pounds back on would get me pregnant, I'd do it in a heartbeat. But I'm afraid of (a) not being able to stop there and putting on way more (I've done it before) and (b) putting on the weight only to still not be able to get pregnant.

Nico, can you please point me toward some medical journal articles that back up what you've said here? I'd really like to be able to show my RE some evidence that this is not all in my head.


Nico said...

galnoir, kay, anon, sorry I didn't respond sooner, I haven't checked the comments to this blog in a little while.

pop in at the fertilethoughts HA board, it will be easier to answer questions there. http://www.fertilethoughts.com/forums/lifes-journey/679313-hypothalamic-amenorrhea-march-2010-a.html

Anonymous said...

I am 18 years old and suffered from anorexia over my junior/senior year of high school. I have not had my periods since April of my senior year and am now starting my sophomore year of college. Before losing weight I was 5 ft 3 and 150 lbs. I had decreased my weight to around 99 lbs.

Now, I have gained weight and am around 109 lbs. My doctors just put me on a birth control pill called "tri-sprintec". I scared it wont get my periods back.

Is it better to ask my doctor to be put on clomid ( the tablet I read about o this forum)?
Any advice is appreciated. THANK YOU!

Anonymous said...

I am 18 years old and suffered from anorexia over my junior/senior year of high school. I have not had my periods since April of my senior year and am now starting my sophomore year of college. Before losing weight I was 5 ft 3 and 150 lbs. I had decreased my weight to around 99 lbs.

Now, I have gained weight and am around 109 lbs. My doctors just put me on a birth control pill called "tri-sprintec". I scared it wont get my periods back.

Is it better to ask my doctor to be put on clomid ( the tablet I read about o this forum)?
Any advice is appreciated. THANK YOU!

Anonymous said...

I am 18 years old and suffered from anorexia over my junior/senior year of high school. I have not had my periods since April of my senior year and am now starting my sophomore year of college. Before losing weight I was 5 ft 3 and 150 lbs. I had decreased my weight to around 99 lbs.

Now, I have gained weight and am around 109 lbs. My doctors just put me on a birth control pill called "tri-sprintec". I scared it wont get my periods back.

Is it better to ask my doctor to be put on clomid ( the tablet I read about o this forum)?
Any advice is appreciated. THANK YOU!

Marie said...

Hi Nico,
What a great blog, thank you. i'd really value your opinion on my situation and whether you think it is reversible without medical intervention (IVF)...

i am 27 years old, 5ft 3 and currently weigh 116lbs. My AMH is 43, but i have a very low LH level.
i had regular periods for one year at 121 lbs. my periods then ceased for a year when my weight dropped to 108 lbs. i then went back to 121 lbs and resumed normal periods for a year before going on the BCP for 7 years. During this time, my weight fluctuated between 108 lbs and 116 lbs.

when i stopped the BCP for 18mths recently with the intention of starting a family, i only had 4 periods at around 4 monthly intervals. I ovulated successfuly on Clomid for 6 months, but unfortunately did not fall pregnant.

While my weight is now at a healthy 117 lbs (BMI 20.6), i need to perform severe caloric restriction (and subsequent macronutrient restriction) to maintain this weight (presumably i have lowered my metabolism through years of caloric restriction).

My question is, do i need to gain weight, or will simply eating a more balanced diet restore my menstruation?

i'm hoping (as a first course of action) to reintroduce critical macronutrients without unnecessarily increasing my weight, but do you think this will be enough?

Your opinion on my situation would be GREATLY appreciated x x

Nico said...

marie, if you cycled before at 121, I would suggest that you at least get to that. A bmi of 20.6 is "normal", but for the most part women who have regained their cycles have had to get to a bmi of 22-23 to do so. Post at the fertilethoughts forum for more timely input! http://www.fertilethoughts.com/forums/lifes-journey/343535-hypothalamic-amenorrhea-new-post.html

Marie said...

Hi Nico,
Thanks, that's what i was thinking. I am nearly there (now 117 up from 108 lbs), although i now have to maintain severely restricted eating patterns to do so! I'm afraid that if i stop restricting, my weight will increase above and beyond 121 lbs as my metabolism seems to be very slow now. What is your experience with this? PS: I'll post this also on the link you suggested.

Anonymous said...

My RE just diagnosed me with HA, and I'm at a loss of what to do.

We didn't discuss weight ... I'm 5' tall and 103 pounds, so on the low end of healthy, but healthy.

I was on the pill for more than a decade and had periods before. My husband and I have been trying to get pregnant since last year, and I'm 38.

The RE seems ready to accept that my periods won't come back ... I've had prometrium induced periods, but my cycle hasn't kicked in naturally.

Really? Could my cycle just be gone? He wants to jump to IVF vs. clomid, especially because of my age. It's just scary, and I don't know where to turn to ask questions or get information on how to proceed.

I certainly don't want to waste time trying to conceive, but that's a big leap! Help! Any thoughts?

Marie said...

I understand your story entirely. My cycles have stopped and started over the past decade depending on my weight. When my BMI was under 19, my cycles stopped completely. They are irregular with a BMI of around 20, and completely normal with a BMI of just over 21.

I came off the pill 18 months ago to TTC (BMI 20.3) and was prescribed clomid due to irregular cycles. I ovualated successfully for 6 months but did not fall pregnant. I'm just about to move on to IVF.

My question to you is: were you heavier when you had regular cycles before going on the pill? If so, i would suggest getting back to that weight. Secondly, are you restricting calories? If so you may be depriving your body of essential nutrients.

I think we have to ask ourselves... "what was i doing differently when i had regular cycles?"...

Even though i'm pursuing IVF, i'm still going to start eating a balanced diet (which will invariably increase my BMI) and hopefully reset my metabolism. If i am fortunate enough for IVF to be successful, having my body in a healthy weight range with essential nutrients will give me the best chance to support a pregnancy. If IVF fails, i'll hopefully be in a position to cycle normally.

HA is a difficult diagnosis, but you'll find that it is treatable with lifestyle changes. Everyone ovulates at different weights (ie: while some women cycle normally at low BMIs, others need to be heavier to cycle normally). It's about reaching that critical BMI so your hypothalamic-pituitary-gonadal axis functions normally.

May i recommend you follow the link below to a forum where there are many women with HA... You can ask questions, gain knowledge and give/receive support. You are not alone x x


Anonymous said...

Thank you for your words and link (I'm the anonymous that posted July 9).

In the past, I had cycles at a lower weight, and I'm a *very* healthy eater right now. I eat more than I ever have because I eat healthfully, including making sure I have fats in my diet because I know the body needs them to run well.

I guess I could gain some weight, but since I've had periods at lower weights, I don't know if that would help.

I currently view HA as the "fibromyalgia" of reproductive diagnoses ... a doctor isn't sure what's going on, so this is what they call it.

Our RE wants to jump straight to IVF. We'll see. Thank you.

Anonymous said...

Nico, I can't believe I found your blog. After a lifetime of obesity I went on birth control at age 22 and lost over 85 pounds, which I have maintained for 6 years. I thought that would make it easy for me to conceive after stopping bcp last fall. I was horribly, horribly mistaken. After a few clomid rounds and scant periods and not responding to povera (but did respond to a cycle of BCP), I went searching for answers and HERE THEY ARE. Because my body is set at 225 pounds and I force it to live at 145 pounds, I seem to have the endocrine system of an anorectic. I am at a healthy BMI (24), but my hormones don't get that message.

My doctor hasn't mentioned anything about HA, but I'm now on an extended regiment of Clomid (100 mg days 3-10) with esradiol days 8-12 and progesterone supplementation after ovulation. Have you seen any success with this regimen, where estrogen is supplemented? What is the answer for those of us at the higher end of normal weights that were once formerly obese? Is it just time? Do I just wait it out? I realize you don't have all the answers, but I am so relieved to have a window crack to a course of treatment. I am currently being treated as a PCOS-er, and that could very well be way off the mark (my only symptom post weightloss is poly cystic ovaries).

Marie said...

Hi Anonymous (from July 9)...

It sounds like you are really healthy and would be gaining all your nutrients... and given that you had periods at a lower weight does seem strange for HA... You are also in the healthy weight range (albeit at the lower end) - but if you're not restricting calories or over-exercising to do this, you're giving your body every chance to function as it should.

Maybe Nico would have more of an idea on this? She checks her blog comments occasionally but posts more regularly on the forum (link in last message). Have you had blood tests done? It appears that the LH:FSH ratio is important in the diagnosis of HA... a low LH level implies HA, whereas people with PCO generally display a higher LH level. The following is an extract from one of Nico's posts on the forum... "the LH/FSH ratio is really the best indicator of whether you have PCOS or HA, you can have polycystic ovaries with both (although in HA the small follicles tend to be random whereas with PCOS they can be lined up on the edge of the ovary to look like a string of pearls".

You are by no means 'old', but conception is more difficult > 35 years, as your RE probably told you. That said, i work as a Sonographer and have performed 3 ultrasounds in the last months on naturally conceived babies in women > 40 years. But given that you are healthy and have had periods at a lower weight, it sounds like IVF may be the way to go. You could work at getting your cycles back naturally, but you never know how long that might take.

There are a couple of girls on the HA forum that are about to start IVF (including me!), as well as a specific IVF forum. It's a great source of support and advice so feel free to join. Whatever you decide to do, i wish you the best of luck and every success x

Nico said...

Anon - July 9 - why straight to IVF? I would think that it would be worthwhile to try at least one cycle of injectibles first? You could also try the clomid extended protocol if you're not in a huge hurry. I also think that even if you have cycled at lower weight it won't hurt to gain a few more pounds - we often have to gain beyond where we cycled before in order to start cycling again (or have optimal responses to treatment).

Anon - July 11 - I think your current protocol sounds good, I have definitely seen estrogen supplementation help with thin lining. If it doesn't work, I also see no reason why injectibles won't work for you. On the plus side, the few women in a similar situation to yours on the HA boards have all started cycling naturally post-pg, so chances are you won't have to deal with this again once you get your BFP.

Meg said...


I just discovered this post while researching HA and believe I fall into your first group. Your blog is so helpful! I'm trying to learn as much as I can about this so I can figure out why this is happening and your post just explained things in a way that makes sense for someone who doesn't have a medical degree :)
I am currently trying to conceive, however after going off Seasonique last October have only had 3 periods (Feb, March, April) and have not had a period in 105 days. Had normal periods before that. I just failed my Provera test, however have normal FSH levels (age 31), so my obgyn is fairly certain I have HA due to excessive exercise but has referred me to a fertility endocrinologist (I go on Tues). Not sure what my BMI is - but I am an elite level triathlete so muscular (was 125 at my lightest this year but have been pigging out and now up to 131 (5'5") lightest back in HS at about 122. I have also cut my training down from 15 to 20 hrs per week to about 10 in the last month. Now on the pill to hopefully get my period and if so will likely try Clomid to get things going. Frustrated about all this and to make matters work I do marketing for a leading pregnancy test company so it is in my face all of the time.

Anonymous said...

Nico - thanks for starting this blog. I found it about 6 months ago when I was first diagnosed and it has been very helpful.

I am 29, 5'7 135. History of diet/exercize but have relaxed things since we started trying to convience (14mths)

FSH 3.5
LH 1.4
Estradiol 117 pmol/L
Testotrone 1.0
No response to Provera or Clomid.

2 questions:

1. Is it worth trying Clomid again at a higher dose? My RE says no but I can if I want. Your blog makes me think maybe I should. Input? He is not open to the EP.

2. Plan to start Repronex cycle in Aug. Any idea of stats on conception success? I have read 25% by wonder if my chances are higher given age, overall good health, good sperm, etc.

Any insight you have would be really helpful. Thanks again.


Nico said...

J. It seems that the higher dose doesn't help much, it's more the longer time on clomid with the extended protocol (EP) that seems to do the trick. If your RE would prescribe 150mg/5 days you could do the EP yourself. It's been working quite nicely for people on the HA board, but it's a very personal decision - the clomid is obviously a lot less expensive, but injectibles provide more of a guarantee of a result of ovulation (although that's not 100% either). I would say that 25% is probably about right for a per-cycle success rate for the injectibles (or really any method of getting to ovulation). Gaining a few more pounds probably wouldn't hurt and may even help too, as your stats are still very much in HA territory. (BTW this is nico just posting from my other account as I'm too lazy to change)

Anonymous said...

Thanks Nico. I really appreciate your input. I actually have a script for 5 days at 50mg (from OBGYN) and one for 5 days at 100mg (From RE) but am hestitant to take anything without their support.

I suspect I will just move to injectables then. I felt awful on clomid so if there is no real chance of it working I might as well skip it. I just wish that a fter dishing out $2K for injectables my chances were greater than 25%. Thinking we will add an iui to that just to up the odds.


Unknown said...

Thank you for this information
. I was recently diagnosed with HA and am discouraged thinking that ivf may be my only option. I struggled with anorexia in the past (I'm over it now). I'm 5'8 and 133 but muscular with low body fat. My doc seems to think that weight gain won't help at all. I didn't understand why since that was likely the reason my period stopped in the first place. Again this web page gives me hope! So thank you very much!

Anonymous said...

Hi Shyanne,

I have a very similar situation. I had an ED 10yrs ago and recovered completely. I eat regular meals with no restrictions but I run 3 miles 3 times a week. I was diagnosed with HA 1yr ago and want children. I am unable to get my period on my own and began injectables to help me. I gained about 5lbs, no big deal and started to feel as if my period may be coming soon. I suggest seeing a RE to help you. Good luck!


Anonymous said...

Nico - do you know if there is anyway to predict success of clomid? Last try my LH was 1.7 but is not at 5. Do you think this might increase my chances of clomid working or no?

Thanks so much for your blog and support!!


Unknown said...

Thanks for the advice! I am seeing an RE in the middle of Sept. Hopefully he can give me some direction as well. I am currently on prometrium and estradiol to facilitate a period. Then I have to do the clomid challenge test. Did you or anyone else have to do that?
I decreased my running from 25 mi/wk to 8-10mi/wk with biking and pilates. I am hoping this helps. NOt sure what my body fat % is. I am looking a buying a cheap skin fold caliper to be able to track it easier.

Nico said...

J. the best predictor of clomid success is response to provera - if you get a bleed, even a small one, chances are excellent that you will respond to the clomid as well. My general recommendation these days is that if you respond to provera to do 100mg/5 days of clomid, if you don't respond to provera to do the extended protocol, 5 days at 50mg followed by 5 at 100mg, or at least 100mg/7 days.

it really is worth at least one shot, it has worked for more and more people on the fertilethoughts board as time goes on and more try it. There are very few who have tried it for whom it has flat out not worked.

Shyanne,the clomid challenge is usually used to test ovarian reserve (I believe), not something that HAers usually have to worry about as our FSH is generally on the low end. It might just be a good thing to do to see if you respond to clomid :-) My suggestion, if you have an ultrasound at cd12ish to see if you're responding and nothing is happening, is to add another five days of clomid at that point. This "piggyback" protocol has also worked for three women on the HA board who's RE's were not necessarily game for the EP. Piggybacking also seems to have good results. AND, give it at least a week, to two if you can stand it, to see if you do respond. As I mention in this post, a lot of us do respond to clomid, but more like CD21+ so it can easily get missed by an RE who expects it to happen by CD14 and if no ovulation is seen then declares the cycle a failure and you go and try something else.

Nico said...

J. sorry, one more thing - I would say yes, an LH close to five rather than one does suggest you're more likely to respond to clomid :)

Anonymous said...

Nico - Just wanted to update you. I have gained about 5 pounds and last month responded to Clomid (100 X 5)! BFN but still had a good strong ovulation. This month again ovulation 6 days after the last pill! We did an IUI + intercourse and now in the 2WW.

Just wanted to say thank you for taking the time to create this board. I don't know if this will be it for me or if I will move to injectables but if it wasn't for this board I would not have pressed my RE to give it a try! I will keep you posted!


Julie said...

Thank you so much for this information! After going through every test known to man (an HSG, internal ultrasound, CT scan of the pituitary gland, bloodwork, etc), I was finally given a diagnosis of HA. I am currently trying a protocol given to me by a clinical herbalist, but I have my next lines of treatment planned out if this does not work. After reading all of this information, I will definitley try the Clomid before jumping to injectables. I was nervous when the gonadotropin was first recommended to me, so it is nice to know that there are some other alternatives to try first. The clinical herbalist that I've seen has had some great success with restoring menstruation in female athletes, so I will see how it goes. If anyone would like more detail on the herbs that I am trying, feel free to ask and I will post some more details.

Wern Luk said...

Thank you so much for this post!!! I feel heartened knowing that there is such a strong support base here. All those times I spent trying to figure out what was going on with my body probably added to even more stress that worsened my H.A.!

Anonymous said...

Dear Nico,
Thank you soooooooooooo much for this fact sheet. I have read a few other forums and every time I freak out totally and end up in tears eating heaps of chocolate... which I suppose is a good thing :) the chocolate, anyway.

I don't know what category I'm in. I have had a problem with compulsive exercise and diet for 15 years, but once I had to stop exercising due to illness and my weight went up to a size 14 before I got better and lost the weight again. Does that mean I have to get to size 14 again?

I'm currently on the GnRH pump. Started in early December last year. The first cycle worked (THANK GOD!!!!) but it took 6 weeks. And we were told not to try just in case I got a multple stimulation - which caused a lot of tears when I realised that I had ovulated a single egg.

Anyway, I have also recently discovered that I need to ask for a bone scan. V. scary considering my history, but better to know... I think....

I have a question about periods coming back after breast feeding. If my bones aren't in great shape, then I may be told to start hormones straight away and not wait. Do you have any experience of this? If I knew it would come back, I would wait.

Once again, thank you so very very much. Can't tell you how much better I feel about my chances of a baby and of recovery.

Elizabeth xx

cheryl said...

Thank you!! I have been struggling with HA for 15 months and this is the most helpful site I have found to date.

Christie said...

Nicole, you are an angel! Until I found your post, I woke up with the feeling that I'm abnormal, sick, worthless and damaged, no hope whatsoever to lead a normal life, to have a happy family. You helped me to hope again...:)
I'm 24 with a history of undereating/overexcersising. My worst BMI was 17.5 :(
I went off the pills 11 month ago, and haven't had a single period since than. I realized that my situation can't possibly be "post-pill" amenorrhea (after 6 month of no periods, and I started to seek medical help, but I must admit...most of the docs had ABSOLUTELY NO IDEA about what was wrong with me! I found most of the useful stuff online. When I realized that I must have HA, slowly but steadiliy I started to gain weight and tried not to run 5-6 km-s every day.
Now I've got a BMI around 21, and run only 3x a week. So I guess one can say, I'm pretty normal and healthy for about 2 months now...still, I haven't got my periods back YET. I'm soooooo, sooooo afraid that I did something unforgivable to my body, and God, Fate or whatever punishes me for my years of being anorectic and...well, plain stupid.

Thanks for everything!!! And let's hope that one day I'll have such nice, healthy babies like yours:)
Love, Christie from Hungary (Easter-Europe, yeahhhh:))

Anonymous said...

I've heard that a gluten-free diet can help restore periods in women with hypothalamic amenorrhea. Has anyone had experience with this? I'm considering trying it after having NO period for 15 months since coming off the pill. I've tried gaining weight, exercising less and all tests have come out normal. My doctor wants me to go back on the pill, but I don't want to. I'm not ready to get pregnant, but would just like to have a cycle again.

Kris said...

Hi, I'm nineteen years old and my period has been irregular for two months now. Instead of the usual dark red blood, my menstruation is brown and too little (that I only use only panty liner). I have lost a significant amount of weight over the past five months which brought me to the conclusion that I might have HA. However, I'm not certain about this yet because my sched with the doctor was postponed tomorrow. Still, I'd like to know your opinions about my case. Do you think it's HA?

Esv said...

Wow, your website blog is really encouraging. I recently joined the HA forum and it has been so helpful. This post alone really helps settle me. For me, I most definately have the second form of HA, and i never understood it. I thought HA was for underweight women (which I am not), how ever I have been an avid long distance runner for years, but always maintained a normal BMI (after losing about 20 lbs). I almost feel like i don't "fit in" with the rest of the HAers, but this post really helped me. Working hard to eat normally, and just walking at this point. Thanks for your site!

stephy j said...

Thank you soo much for this blog I havr recently been diadnosed with HA. I am sooo scared.Any other advise out there

Anonymous said...

Hi Nico,

Quick question for you--as someone who has been TTC for 14 months (if you can call it that when I'm not actually ovulating..) with a fairly good response to Clomid (including EP) but no BFP after 4 cycles, my next step is to see an RE....question for you: more appropriate to see a regular RE, or go to a fertility/IVF facility? (the latter being a bit more scary for whatever reason, but probably necessary giving duration of amenorrhea/TTC and lack of success with Clomid) I am 31 y/o, btw.
THANK YOU for all that you do!

Nico said...

S, a regular RE should be fine. Don't give up - we've had a couple of people on the HA board get pregnant on their fifth or sixth clomid cycle... you just never know. xo

小婕 said...

Nico, u r unbelievable!!! Hahaha, I see how a Phd education plays here! Thank you so much for your info. I'll read through again and again to make sure I fully digest it and have the right idea planted in my mind.

Unknown said...

Hi Nico! I had a question and was hoping you have more info. Once you up your calories and gain weight and your period returns, do you go back to eating the normal amount of calories for your body weight/height/etc.? I can't find any info on how I'm supposed to transition back to just eating regularly to maintain my weight. I'm nervous I'll lose my period again if I do this.

Anonymous said...

Hi Nico! thanks for posting and I'll surely be reading all of your blogs similar to this one. When I was 15, I was diagnosed with primary HA and am 17 now and still not having my.. I AM struggling with this for years now.

My doctor said my brain(pituitary) is the one that's not functioning plus the fact that I have hypothyroidism and that both my uterus and ovaries are infantile.

Well, THAT is why my doc thinks i am at risk of NOT having a baby (in the future).

Being a 17-year-old teenager and having to know all about this since 15, it was very hard for me to deal with.
so thanks for posting these information! :)
i feel hopeful.

Anonymous said...

Hello Nico,

Boy, am I happy I found this blog. I am so confused. I was just diagnosed with HA yesterday and was glad that nothing else was wrong, but am confused as to what to do now and expect next.

I am 110 pounds, 5'4" and 31. My LH was 1 and my doctor tells me 2-4 is where I need to be. That was the only level that was off.

She said to cut my usual 6 days of exercise down to 3 days, which will hopefully help me to gain another 5 pounds. She didn't say to change anything about my eating.

My questions are (a) do you think this is enough to do? And (b), how long after gaining the extra weight does it typically take for a cycle to resume?

Thank you so much for your advice!

karenann said...

I'm in the same boat I haven't been diagnosed but I went off the pill 3 months ago and still no period. My results are all normal except for a long uterine lining. I am a personal trainer and was working out running weights yoga 2-3 hours a day 6 days a week. And had an eating disorder which I stopped 3 months ago. I am working out 1 hours a day now trying my hardest to be OK with getting fat. I want to get get my period bad. Should I stop working out completely for a little while or is it OK to stay moderate and eat well? Thanks for your blog it helps a lot to hear I'm not the only one.

Anonymous said...


Thanks so much for this blog!

I am interested in peoples experiences with respect to the return of your period/ovulation and whether you experienced multiple follicular phases (i.e. no period but obvious changes in cervical fluid, mood etc)???

I have had ~5 periods at random intervals over the past 3 years. I am 25, 130 lbs. I decided to stop running 4 months ago which I have done 5-6 days a week my entire life. I replaced the running with 6 days of weights. With no weight gain, I have started to feel hormonal changes. I had all the symptoms of ovulation etc but its been 6 weeks since then and still no period? Are these multiple follicular phases common before you ACTUALLY ovulate?

I guess I want to know the physical changes you would expect to feel when your body is thinking about cycling again??? Whether or not you can feel the symptoms of ovulation etc and how long it has taken others to get back into a proper cycle with a period etc?

Thanks in advance.

Suzie said...

Thank you so much for this information Nico! I have hope for my situation thanks to you!

Anonymous said...

I just got my period back. I was a BMI of 24 before I lost weight. I had anorexia though, I got to a BMI of 16. Now my BMI is about 20-21 highest 22 because I don't weigh myself anymore. Lucky me I don't have to gain to 24 again to get my period back!

Lisa said...

People don't seem to understand that doctors can be wrong. They are human after all.

Tessa Anderson said...

Hi, great post! Just a quick question. My body fat is pretty low at 15.6% but my BMI is 20 to 21. I am looking at not necessarily gaining weight but body fat. I guess I should eat more carbs, but what about exercise? Less cardio but maintain the weights??? Advice appreciated!

Anonymous said...


I am so happy to have found this! I am a 22 year old diagnosed with HA. I was very underweight (BMI of 17) due to restricted eating for about 2 years. I gained weight and have been at my current BMI of 19 for 5 months now. My RE put me on Estradiol (.5 mg/day). When I started my period in high school I weighed less than my current weight. Is it necessary for me to continue gaining weight or is that weight sufficient? Thank you!


Anonymous said...

I don't know if anyone else in the comments has my history to HA - I just never developed as a kid. I was always tiny and couldn't gain weight if I tried. My dad was always worried that I had an eating disorder, but I never did. Never got my period. It was like I was in a body of a 10 year old. I hated it. I hated my body for that. I finally saw a dr. when I was 18, he put me on estrogen and within a few months i gained lots of weight (healthy weight that is) and I grew a few inches. Years later they did more studies on me. Years later, I got married and we tried several cycles of FSH/LH. The 4th time we got pregnant and I carried the baby to term. (Greatest gift in the world!). Now we are trying again, but hasn't worked. It seems that my uteral lining is too thin to hold an egg...(which has always been an issue for me in the past). I"ve been asking my dr. what else i can do to help my body - he put me now on estradiol and progesterone. Any other suggestions? It seems like he doesn't offer any helpful information unless i ask for it and he wouldn't even put me on this or helped me unless i asked for it. I'm a little annoyed since he's done this to me with several things. I don't have money to throw away at "trying". If anyone knows of anything that would help me out - you can email me at carlaschellenberg@hotmail.com; I would greatly appreciate it. I've never known anyone with my issue since it was never brought on by the reasons listed in the article. Thanks so much and thanks everyone for sharing and for this post.
Carla -

Nico said...

Marie - BMI of 19 is still really really thin. even if you cycled there in high school, our bodies are not fully developed then, and it is normal to weigh more as a full adult. Honestly, I'd aim for a bmi of at least 21 and see what happens...

Tessa, you could definitely stand to gain some bodyfat, which is probably going to translate to a few more pounds. you will be surprised at how few people will notice; if they do, they will think you look better :) I'd suggest to start with no more than four days of exercise a week, and even then only 30-45 minutes.

Carla, sent you an email :)

Alexandra said...


Thanks for this informative blog post. I'm not sure you'll be able to answer my question, but I thought I'd try because you seem so well-informed on the topic and I've had bad luck so far searching for answers.

So here's my story (made as short as possible!): I had an eating disorder that caused me to lose my period for about 6 to 9 months beginning when I was about 15 and a half years old. Once I gained the weight back, my period came back, and I've never lost my period since (I'm presently 22 years old). I'm curious now if those 6-9 months of anorexia during late puberty would have had any effect on my development in terms of bone growth, breast growth, etc.

When I had hypothalamic amenorrhea, was zero estrogen being secreted, meaning my puberty was also put on hold? And if so, once I gained the weight back, would my pubertal development have picked up where it left off, or is it possible that I missed the boat entirely on certain changes that would otherwise have taken place in my body?

As a bit of background on my development, I got my first period when I was 11 and stopped growing in height when I was 14. My breasts had grown steadily since I was about 10, and I can't tell if they've grown at all since my anorexia. Of course, they got a little bigger after anorexia due to the weight I gained everywhere, and I was on birth control for a couple years in my late teens-early twenties, so my breasts grew from that also. They're a little bigger now than they were before I had anorexia, but I don't know if I continued developing or if it's just from the BC. I'm certainly not much bigger than I was before anorexia (less than a cup size).

Please let me know if you have any information that would be helpful to me! Thanks for reading :)

Muneer Hussian said...

case study solution
case study solution
case study solution
case study solution

case study solution
case study solution
case study solution
case study solution

case study solution
case study solution
case study solution
case study solution

case study solution
case study solution
case study solution
case study solution

case study solution
case study solution
case study solution
case study solution

case study solution
case study solution
case study solution
case study solution

case study solution
case study solution
case study solution
case study solution

case study solution
case study solution
case study solution
case study solution

Unknown said...

This blog was so helpful! I have been trying to figure out what's wrong with me since 2007. I had an ED for 3 years in junior high and when I finally recovered and gained enough weight back I had irregular periods so was put on birth control when I was 17. I went off of it when I was 25 in hopes of getting pregnant that year and my period just stopped. Mind you I was a personal trainer and group fitness instructor and worked out like crazy. Several gyn's, an endocrinologist, and a fertility clinic later and still no answer. I was even diagnosed with PCOS! The endocrinologist was sure I had it and insisted that I had to take Metformin to get pregnant. Well a month later I got a new job and dropped most of my classes and didn't have time to work out as much and I got pregnant on my own! So 3 months after I stopped nursing my son I had one period and after that.....nothing. Even though I'm not working out as much as years past I eat more restrictively (no processed food and less grains). So I went back at trying to figure out what's wrong with me and finally figured it out after doing the 10 day progesterone challenge. Now I'm trying to fix my problem myself :)
To those who have lost hope, don't! I had put my body through so much and still was able to have a happy, healthy son who will turn 2 next week :)

Anonymous said...

Thank you so much for sharing! I was just diagnosed as HA. I was once very overweight. I have been at my current "healthy" weight for almost 5 years, and have not had a cycle for 4+ years. My bmi is around 20 to 21. It was great to hear of success other people have had and hope that though it may take longer than those never overweight, that it is possible to recover.

Nico said...

Heather, thanks for sharing your story :)

Anon, I would aim to get your bmi to around 22-23, it is not going to hurt and very well may help. Many women have seen better response to treatment at a slightly higher BMI. I will say that I often encourage those who used to be overweight to move to treatment (clomid would hopefully do the trick) as it seems to be harder to get natural cycles back. Post-baby is a different story though, I would bet a lot of money that if you do need treatment this time around if you want a second you would not need to. (assuming weight and exercise are kept at reasonable levels :)

Sophie said...

Wow I love all the work and info you have put into this post!! Ive had amenorrhea for 4 years now. Got ill whilst in the midst of an eating disorder, that only fueled my weight loss further, then became an anorexic exercise addict. I got down to a bmi of 14 - still can't believe it happened. I recovered to a bmi of 21 then got meningitis and lost 13lbs so currently at a bmi of 19.5. I'm just so fed up now! I no longer run and just strength train 4 days a week. My dr put me on a progesterone tablet, I got a very light period straight after that and nothing again. I really don't know what to do! Whether I should gain weight or just sit and wait. Trying to get an appointment is a nightmare. I love this blog!!

Carrie Leigh said...

Hi Nico,

Thank you so much for maintaining this blog. I never knew HA was such a big problem for so many other women. I am happy not to be alone!

I am 29 years old, 5'5", 110 lbs, BMI 18.3. I run about 4 miles per day and maintain a very health diet. My running is my stress-reliever and morning "jump start" to my day.

I went off the pill 9 months ago and did not get a period until last week, after an entire month on estradiol. (A few months ago I failed the Provera challenge, and also did not respond to an estrogen + progesterone regimen). I have met with my RE many times. He has diagnosed me as having HA, but has never said anything about my exercise or weight. He just said HA is common in women who have anorexia and triathletes. He says Clomid will not help me, and has suggested injectibles or IVF. Are there any other options?

Thank you so much for creating this wonderful helpful community!

Nico said...

Sophie, I would absolutely try and gain again, at least back to where you were before the meningitis. bmi of 21-23 seems to be the place where most people start cycing naturally or at least respond well to meds - I think especially with rapid weight loss as when you're sick, your body goes into conservation mode - you need to convince it that you are going to feed it well!!

Carrie, I would very very stronly encourage you to cut out your running - running seems to be the worst exercise for causing / prolonging HA. Walking or yoga are great substitutes - and not power walking to burn calories! I'd also work on gaining a bit more, even if your RE doesn't say anything about it, it really can only help. And give the clomid EP a shot - the worst thing that happens is that you don't respond, and you've waited an extra month. Best thing is that you do respond, and you're out a lot less in cash (and probalby stress). :)

Sophie said...

Thanks for the reply Nico!! Yeah I had a feeling that would be the case! I'm thinking it is some sort of positive that I responded to the progesterone? I'm looking at a 10lbs gain!

Maggie said...

Hi Nico - I'll spare you the long background, but let's just say I've done the work to gain (and continuing to gain) the weight, cut the exercise, and take the bold step of starting with a new RE that is going to monitor me for 3 months, sans any drug intervention (lots of this previously unsuccessfully). I was also on birth control for 20 years before we started trying about 2 years ago. Anyway, this is my first un-medicated cycle with the weight on and my body has produced a follicle. (Woot woot) That seems to be taking a long time, as you had cautioned in your 2009 blog post. If you had a minute free and could opine on the following.....I'd be so most appreciative. I don't have all the details for every day, but here's what I've got... Day 19 - estrodial 60, LH 7.3, progesterone < 1....Day 28 - estrodial 107, LH 1.3, progesterone < 1, 13.5mm follicle growing.....Day 35 - estrodial 64, 17mm follicle growing, Day 39, estrodial 60, LH 5, progesterone < 1, 28mm follicle. So, today is Day 40 and still no ovulation. I got a (presumed false positive) clear blue happy face 2x on Day 38. I go back in a week for monitoring. Is there any hope this thing might decide to start its journey down the tubes? Any similar experiences with a slow first cycle? Thanks very much. Any insight you have would be much appreciated. Maggie

Unknown said...
This comment has been removed by the author.
Unknown said...

Thank you for this post! It's so helpful and informative! I'm hoping you have some advice for my particular situation, I tried to read through comments to see if it was addressed but didn't find it. My symptoms are the same as these other women's: I lost weight, went from 5'6" and 133 to 117 at the lowest.. Now I'm a steady 122. I feel good and look good, I'm eating PLENTY, yet I have not had a period for 21 months, since I first lost weight.
The difference in my story is that I'm not interested in getting a period back (for baby making purposes or just to have one) which is why I haven't addressed the problem at all, till now.. I saw a doctor for a check up and mentioned it but all she did was test my thyroid function and when she saw it was normal we didn't pursue the topic.
After some articles I've read lately, I'm worried that I'm weakening my bones or causing other permanent damage to my body that I'm unaware of.. It sounds as though period loss could be a sign of more serious nutrient and hormonal deprivations happening to the body. While I'm not desperately trying to get my period back, I do want to make sure I'm not harming myself.
Do you think I need to seek medical attention to get a period back? Or possibly just change my diet?
Thanks so much for your help! If you could reply here, I would really appreciate it!!
Thanks again

Nancy said...

This is a great blog! I came off of the pill 5 years ago and never got my period back. I had lots of tests concluding that there wasn't anything physically wrong with me My gyno said not to worry that you don't need to menstrate and to come back when/if i wanted to get pregnant. I'm not under weight 5'2, 118lbs but am an avid runner. I had a knee injury earlier this year and after 6 weeks of zero running I had a period, but once I started running again it went away. For me changes in weight did't help. The only way for me to get my period back is to stop running. I'm 33 and my husband and I are on the fence about having baby, we both would prefer if it could just happen vs. being a decion but unless i give up excrcise thats not likely to happen. Has anyone had any success with other options aside from gaining weight and giving up running? Thanks Nancy

Anonymous said...

Wow. Thank you. In looking over so many message boards and the like, none of them came close to wrapping up, summarizing and giving a complete picture like yours does. I truly appreciate your time, thought and heart in writing this! Blessings, n

Marie said...

Hello! I am 23 years old and recently gained weight to a healthy BMI of 20 (was at BMI 17 at my lowest weight around 2 years ago). I suffer from amenorrhea and my OBGYN put me on .5MG Estradiol daily to help with hair loss, break outs etc. My question is: will this amount of estrogen prevent my body from returning to its natural cycle? My OBGYN said that the amount was very low and would not mask a period, but I am still curious. I wonder if I should go off the Estradiol to see if my period will resume with a healthy body weight. Thank you for your help!!!


Unknown said...

recenlty i m searching about this topic and i found your blog really its very informative awating for new post

Buy Ostarine

Katie said...

Hi everyone,
I was diagnosed with hypothalamic amenorrhea about a year ago. I am a normal BMi (5'2 and 115lb, and exercise only 3x/week- nothing too strenuous) I am not sure of the cause of this but basically was told there is nothing I can do. I am really concerned with going this long with such low estrogen levels because of the higher risk for osteoporosis. Has anyone heard of any preventative measures to take?
Thanks in advance!

Kate said...

Thank you for the great post and the chance for me to relate with some other's experiences, it sure does help with my struggles of constant fear,stress and all the side effects of period abscence.
I'm in the second group having lost significant weight in a short period (started balanced but went too far with dieting), but now i believe i'm balanced with both weight and food intake although i still stick to smaller healthy portions of food with no sweets other than fruits and very little fat use (im 163cm in height and 55kg - BMI of 21)
-My question is, Should i change my eating habits further even though im normal weight?
Is it my only option left? I have gone with pills with very low amount of estrogen and progesteron but it only helped for 3 months (while taking them)while i havent had normal periods for over a year now and the stress that comes with that is overwhelming.Being constantly stressed I blame on not having periods, but the stress is also what prevents it so i'm kinda stuck in a circle..
Thank you so much again for the post and i can't wait to hear from you!

Anonymous said...

Thank you SO much for posting this! I was recently diagnosed with HA and had no idea what it was and could barely find anything on the internet that put my mind at ease. Basically what I found was that I would most likely be infertile and need "help" getting pregnant. I am in college and 21 years old, not looking to have children anytime soon but was pleased to read your blog and realize that this is a curable disease! Of course like you said I do not want to gain weight, and honestly will probably not do that until I am trying to get pregnant. But it is a relief to know some more about HA and that I'm not the only one! Again, thank you for taking the time to write this blog. It's appreciated by so many young women who have been diagnosed with HA and no information. Your the best!

Stella said...

Stella David Glory be to God finally i am pregnant after 5years of marriage,i was devastated and frustrated thinking i will never get pregnant again but after the help of Alisha Lura i got pregnant and now just put to birth . i want to appreciate Mama Alisha Lura for the help of making me pregnant again after all the pains i pass through with the family of my husband but thank God today we both live together happily thanks once again : getyourexbacksolutionspell@gmail.com or you can visit her website on http://weeblyalishaluraspell.weebly.com/available-spells.html

Unknown said...

do you think we who suffer from HA can get pregnant without any method (clomid,injectables,etc.) & without a period ?

Nico said...

Maxine, there have been some women with HA who have recovered and gotten pregnant on their first ovulation (so no period beforehand)... with recovery due to eating more and exercising less. If you don't make those changes it is highly unlikely that this would happen (although I will never say never).

Unknown said...

Thank you. Why do you think there are so many women who experience HA after stopping birth control? Also, does clomid work for women who have not had a period in over a year?

Mistress Mouse said...

Robin- How slow? I am on day roughly 30 if menopur stim and still no follicles larger than 11. Super frustrated. Were you similar? How long did each round take?

Anonymous said...

Thank you for the blog and for all you make to help other people recover from NA.
I have recovered twice from hypothalamic amenorrhea. The first time was when I was teenager and I suffered from an eating disorder. The second time has been some months ago, after a year of amenorrhea due to low weight and intense exercise. Althought in 6 months of recovery I haven't recovered yet regular periods, I thought that all was under control and I started exercise a little again, but my periods have stopped again. I do half the exercise I did before and I have not lost weight.
I would like to ask you what is now your exercise routine. I know your are not a physician, but I know that you read a lot about HA. I would ask you if hypothalamic amenorrhea is a mechanism or if the hormonal equilibrium works each months. I mean, could my period be blocked only a months or a couple of months or the entire mechanism of hypothalamic amenorrhea could have restarted, so I should expect several months amenorrhea?
Thank you!

Lauren said...

Hi there,

I have recently been diagnosed with HA. I am having a hard time coping with it, feeling pretty depressed and my anxiety is through the roof. (Noticed I have gained anxiety in the last couple of years)

My story, the typical being on the pill for 11 years...
3 years ago I started exercising, changing my diet... did the whole low carb and fat thing, then I transitioned into weight lifting and eat more... following a meal plan that included carbs. I lost weight felt good, then I went into more weight lifting and followed macro counting. I got off the pill in Sept 14... and have been waiting since for my period.

In March I demanded my doctor to do some blood work to try and see what is going on... found out my estrogen was low. She decided that I qould see the specialist and they tried the progesterone, of course this failed. I was then referred to the fertility specialist and they diagnosed me with HA. I am doing a semen analysis for my husband, blood work, and 2 ultrasounds starting this week, I also have an MRI booked for the end of July... then I will discuss more treatment options with the endrocraniologist...who has suggested the GNRH pump... does anyone know about this? and have had any success with it. I would like to conceive like yesterday...

I have read so much and have decided to cut my work outs and try my best to eat intuitively... and not track my macros as much. I have increased fats in my diet the last two weeks too...

if anyone else has any knowledge or went through this...

I am very worried about the MRI, she said its just a precaution... to make sure they aren't missing anything, but I am worried she isn't saying something to me.. but maybe I am wrong...


Please email me... I am looking for hope.

Violet said...

I just wanted to share that after 7 years of amenorrhea I finally got my period back. I started gaining weight three years ago and gained 8kg over a year. I didn't stop exercising at that point and therefore didn't get my period back. 7 months ago I decided to stop running and just walk and do yoga and low and behold my period came back! I went from a BMI of 18.7 to about 21 for this to happen and even though I didn't gain more weight when I stopped running I have noticed the fat distribution in my body has changed and I have more coverage on my hips and bottom. Such a huge relief. I'm 31 years old and we can try for a baby now :)

IVF Centre in Delhi said...

Thank you! I hope that as I continue to learn and grow I am able to manage my symptoms and have a voice like yours. IVF Treatment in delhi is best gyane and infertility center. Thanks again!!

Anonymous said...

An amazing testimony on a Native Iya Hindi root and herbs who help me to get pregnant, So me and my partner have been trying for a baby for the last 2 years now. I don’t have a regular cycle so it is hard for me to tell when I’m ovulating or not, but we always have sex at least 3 times a week, sometimes more. I know it can take up to a year to conceive but everyone i know who have had a baby have conceived within 2-3months of trying and it is really getting to me. my partner had a fertility test about a year ago and his sperm were fine. I’m thinking it could be a problem with me but I’ve never had any symptoms of any problems. My partner does smoke and have the occasional drink, and i used to smoke and also have the occasional drink. i know i’m slightly overweight but that shouldn’t affect our chances too much, one faithful day my friend told me to contact Native Iya Hindi that help her sister, then i contact the email. hindinative@yahoo.com,He sent the Herbs to me and gave instruction on method after three weeks the doctor confirm that i am pregnant thank you Native Iya Hindi for helping me get a baby, I am thankful for all he had done. contact him via email:(hindinative@yahoo.com .Or whats App number+19145295224), if you are trying to get a baby.

Unknown said...

I first had symptoms when i was 17 and was told that i had PCOS (thin people type PCOS) and was officially diagnosed at 22 ans now i am 35. I have always had regular periods and unless on birth control pills were they irregular at times and I had a hard time getting pregnant because of the absent periods. I was always told by doctors that I would have a hard time conceiving so I would only go on the pill periodically which i did for more than 4 years, not for protection against getting pregnant, but just to get a period (since I was told it's not healthy to have less than 4 or so periods a year). Last time I went on a 3 month birth control pill and then stopped again because the medicine was not curing my pcos nor making me get pregnant. I went in search for a cure and ended up with so many drugs, medicine and even soaps that didn't work. I actually thought at a point that i was cursed that there is no cure for it, i was prepared to live like that till i read a testimony of a patient who suffered from pcos whose case was even worse than mine and how she was cured completely, I was amazed and at thesame time anxious and curious so i had to contact the doctor with the contact details that she left on the note. The doctor gave me so much hope and confidence with her kind words of encouragement to believe in myself and i was lifted because no one has ever given me hope like that before. I ordered the medicine, took it for 8 weeks and to my complete surprise, all the facial hairs, weight gain and all disappeared I ended up getting pregnant within a few weeks of completing the treatment! I was in shock. I think the main reasons it happened was that I never gave up and was ready to try alternative treatment so my body was back to normal. Before now i never enjoyed sex because it was very painful but now i do and my husband is the best thing that ever happened to me.. I hope this inspires some of you because I never in a million years would have thought that I would get pregnant and was getting frustrated and now our baby is due next month! You too can reach her on [aletedwin@gmail.com] for more information, advise and also how to place an order for yours.

IVF Prescriptions said...

Nice article.

Laura said...

Marie, your story is exactly like mine. Same height weight birth control etc. and I've failed 4 oral medicated cycles. Did you end up conceiving?

Katie23 said...

Hi Nico!
Thank you so so so much for your post. It is so informative and helpful. It's unbelievable to me that so many doctors have no idea how to diagnose or even treat HA. I think I have a pretty textbook case (I was on the pill for 11 years, doing cardio for an hour a day minimum, and eating about 600cal/day for the past 8 years), and my OB didn't diagnose me when I hadn't had a period for over 8 monhts after getting off the pill. Not until I went to an RE, a year after getting off the pill, did I finally get diagnosed. After reading your blog two months ago, I cut exercise entirely and upped my calorie intake to at least 2k a day. I'm up 15 pounds and for the first time ever, I actually have ewcm!

My doctor has put me on a very low dose (2.5 mg) of letrozole since they said clomid wouldn't be good because of my lining. Do you have any data on letrozole's effectiveness? I'm on my 4th cycle now (although for the first 3, I was still exercising and eating close to 1500calories), and they believe I was cycling on the letrozole, but my lining remained thin. My lining is finally starting to thicken (6mm at ovulation), but I'm wondering if I should just skip straight to letrozole and IUI. What do you think? I'd love your thoughts.

Thank you so much!!

Laura said...

Your story is EXACTLY like mine. 10 years of birth control pills. Marathoner and didn't eat enough on top of it. Stopped the pill a year ago and didn't get a period until started on letrozole. This is also my 4th cycle and my lining has also been thin, also 6mm last ovulation (2 cycles before was 4.5mm). This cycle I asked for estrogen to take cd7-cd12 to thicken my lining. The issue is still my cervical mucus and and perhaps the next step is iui.

I also have never been able to ovulate with an lh surge and have taken ovidrel to ovulate each cycle (in addition to hcg for short luteal phase).

Let me know what the doctor initiates as your next step (but hopefully you don't have to go through one!)


Katie23 said...

Laura - I'm floored by the similarities between our stories! I had an LH surge only once, so I will be doing the trigger shot (tonight in fact). I also need to take progesterone after ovulation since I have a thin lining and a short luteal phase as well. I really wanted to take estrogen earlier in the cycle, but the RE told me it wasn't necessary (which directly conflicted with my OB/Gyn who told me I HAD to take estrogen). Are you being monitored each cycle to determine when to trigger? I was being monitored vigorously by my OB/Gyn, but now, with the RE, I feel like I'm taking a step back because he decreased my dosage and isn't putting me on estrogen or monitoring me. It's been pretty frustrating, and I'm so confused about what to do next.

I'd really, really like to talk more/exchange RE advice, if you're open, since our histories are so similar. My email is katherinethompson923@gmail.com. Please email me and maybe we can connect over the phone.

Hope this cycle works for you, as well!!

Shelley Michele said...

I am Shelley from Los Angeles,California, I want to testify on how i got cured from fibroid, I have suffered from fibroid since the 2011 with so mush pain,that i have to spend so mush money getting pain relief in the hospital, and I have visited several doctor ,but all to no avail, my world was gradually coming to an end because of the pain during my menstrual period until i saw a post in a health forum about a herbal Dr Williams who use herbal portion in curing people from pcos and different kind of diseases including fibroid, at first i doubted if it we be able to shrink the 9cm large fibroid in my womb, but i decided to give it a try, when i contacted this herbal doctor via his email, he prepared a herbal portion and sent it to me via courier service, when i received this herbal medicine, he gave me step by step instructions on how to apply it, when i applied it as instructed, i was completely free from fibroid just for 1 months of usage,i we recommend this to all my friend family in the world today who still suffering from fibroid you can contact him through his email on drwilliams098675@gmail.com for help.

Anonymous said...

I am so happy I found this blog! I actually am reading the book no period now what, but it will be amazing to get some insight/ actual experiences. I have a very long HA story, but am now recovering. I started 75mg menopur on saturday, and because I am terrified of overstimming, I went in for an early U/S and blood test yesterday--3 days into the injections. So far I have two lead follicles at 11mm and 12mm and estradiol of 49, which is apparently on track. I go back tomorrow for another U/s but am so scared that I am going to have more than 2 or more large follicles. I am really hoping that I only get one mature follicle over 15mm and that the other one stops so that I can continue this cycle without risk of multiples! PLease let me know your experiences/advice. thanks so much!!

Unknown said...

I can’t believe this. A great testimony that i must share to all fibroid patient in the world. i never believed that their could be any complete cure for fibroid with out going for surgery ,i saw people’s testimony on internet on how Dr ODIA prepare herbal root and herbs that shrink there fibroid naturally. i had to try it too i contacted him on: odiaherbalcenter@yahoo.com. and him told me how to get his herbal medicine, and you can,t believe that in just few weeks i started using it all my pains stop gradually . Right now i want to tell you all that i just give birth to a baby boy last month,and on till now' i have not had any pain, and i just went for text last week and the doctor confirmed that there is no trace of any fibroid in my system. after 8 year of suffering from fibroid am now free, Glory be to God for leading me to this great Dr ODIA I am so happy as i am sharing this testimony. My advice to you all who thinks that their is no herbal cure for fibroid that is Not true ,just contact him and get cure his email odiaherbalcenter@yahoo.com and you will be free and free forever, Try it and you will not regret it because it truly works. i hope to see your testimony soon.

Anonymous said...

Hi Nico,

Thank you so much for your blog. I live in germany where HA isn't very known by the medical staff.
I've diagnosed with PCOS, eventhough i had no signs of it( I had a bit more follicules than you should have on your ovaries, like 12 and 13 on each ovarie).
Meanwhile i've been reading about HA a lot and I do believe I fall into this classification (a long history of eating disorders, undereating, been stressed out. nevertheless I do have some questions as I 've had my period at a much lower weight (during my 10 years of anorexia) than nowadays..it's so frustrating!
My estrogens are very low, but my LH is quite normal (4 in 2016 and 11 in 2017)..which is also weird and uncommon in HA!
I hope you can give me a piece of advice,
Sincerly yours, Karen

Teroes.com said...

Thanks for your information. Please accept my comments to still connect with your blog. And we can exchange backlinks if you need.
What Is Peanut Allergy?

What Is Milk Allergy?

What Is Alopecia Areata?

What Is Amenorrhea?

What Is Amputation?


I'm Trisha Nelson, from the USA. I contracted HIV 4 years ago, I was told by my doctor that there's no possible cure for HIV/AIDS. I started taking my ARV's, My CD4 was 77 and the viral load was 112,450. I did research on a herbal remedy and I saw Dr. James Herbal mixed medicine, also I saw a lot of testimonials about him on how he uses His strong herbal mix medicine to cure HIV/AIDS and other illnesses. I contacted him and told him my problems, He told me not to be worried anymore that I will benefit and get cured of his herbal medicine for HIV/Aids. I never doubted Him because I believed I will be cured as nature has the power to cure all kinds of sickness when herbal medicine is being used in the right proportion. He prepared his herbal drink and sent it to me, and I took it for 3 weeks morning and evening in a quantity he told me, after that, I went for a check-up, and I was cured of HIV. His herbal mix medicine has NO SIDE EFFECT AND EASY TO DRINK, there's no special diet when taking Dr. James herbal mix medicine. He told me he got cures for diseases like Alzheimer's disease, Cancer, Bipolar disorder, Herpes, Hepatitis, Schizophrenia, Fibromyalgia. Dupuytren's disease, Neoplastic, Diabetes, Celiac disease, Cerebral Amyloid Antipathy, HPV, Weak Erection, Wart Remover. Ataxia, Arthritis, Amyotrophic Lateral Sclerosis, Adrenocortical carcinoma. Asthma, Allergic, Wart Remover, Melanoma, Parkinson, pectoral dermatitis, thyroid, HPV, ALS, KIDNEY DISEASES, SHINGLES. Pile, You can reach him on his Email address [GREATCUREMAN@GMAIL.COM] INFO @ DRJAMESHERBALMIX@GMAIL.COM